Living With POTS: I Am Not a Zebra

Zebra

Although Zebras are beautiful creatures, when doctors use that term it brings back so many negative memories and a time of uncertainty for me.

My Little Secret

Let me tell you a secret, I normally don’t speak much about my “real” life on here. Although I do have a page about being a P.O.T.S Mom, I don’t like talking about it. When I say “real” life, I mean as a person dealing with an illness. I have noticed that there is a preconceived notion if you talk about being sick it is a sign of weakness or whining. However, I need to start being straight up with all of you on how I am dealing with this. Hopefully I can start spreading awareness about this condition. I wasted 18 months of misdiagnoses and do not wish that on anyone. So here goes!

My journey with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome started way before I had to stop working as a Registered Nurse in 2009. I frequently changed jobs to accommodate myself as these strange new symptoms arose. At the time they were vague and sporadic. When the tremors began in 2004 I was working in a NICU and no longer could safely perform the basic care needed for the premature infant. I was dropping things, lightheaded and having palpitations. I had to change jobs three more times before all the symptoms arrived at once and I could no longer work.

I was almost fifty years old and of course the doctors automatically said it must be anxiety and prescribed pill after pill.  I balked at the idea, I couldn’t understand how by just walking a few steps to the kitchen which made me short of breath, tachycardic, chest pains, palpitations, lightheaded and nauseated would be caused by anxiety. As soon as I would lie down most of the symptoms would disappear. So I was “anxious” only when I walked but once I arrived to the couch or bed somehow the “anxiety” was gone?

After eighteen months of countless tests, medications and appointments to numerous doctors, they were all seemingly brushing me off as a mental case. They never actually said those words but I did feel that was what they were thinking. They did however call me a “zebra”.

From Wikipedia: “Zebra is a medical slang term for a surprising  diagnosis. Although rare diseases are, in general, surprising when they are encountered, other [common] diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.”

I became increasingly frustrated and angry and decided to take matters into my own hands. My financial situation was in the toilet, I had one son in college and another on his way and debt collectors calling me all the time. Now THAT was indeed making me anxious!

I didn’t have black stripes and I was darn sure there had to be a name for what I was suffering with and it was not “zebra”.  I began researching more about my symptoms and eventually found what is currently my diagnosis.

I also found that the University of Washington Neurology Clinic had the only Autonomic Dysfunction testing center in the area, and to my surprise only one Neurologist who specialized in it. At my earliest cardiology appointment armed with a printout of several pages of symptoms, I asked the cardiologist if he thought this could be what I had. He said it was possible, however he was not sure how to treat it. So thankfully with the Neurologist’s name in hand, he gave me a referral.

I had to wait over four months more before I could see the Neurologist, I later found out that apparently I was not the only one with this diagnosis. When I finally had the testing it was confirmed that I have an “invisible illness” called Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

After speaking to Dr. Oakley in 2010 a strange relief swept over me. It wasn’t that I was glad I was sick, but I was glad that there was finally a diagnosis, a name for what I had. I was also extremely grateful that there was a doctor that knew how to treat this condition. I was hopeful that now I would start seeing some relief from these symptoms once the proper treatment began and maybe in the near future get back to work.

As I am writing this it is currently mid 2015. Although I haven’t been able to get back to work, some of the symptoms have decreased with medications, while others have increased or remained. It is pretty tricky to treat and I am happy with even the partial symptom management.

Being on the couch most days and barely being able to do anything is pretty depressing. You also gain weight when you do nothing! What a surprise! I realized that when I ate anything with the bad carbohydrates, sugars and meats I felt sicker, I would actually pass out and wake up a few hours later not even remembering lying down.

Diet and Exercise

Recently I watched the movie, “Forks Over Knives” on Netflix, you can read more about it here at, “Journey from Meat to Tofurkey”. So we have been eating more vegan & gluten free recipes. I will be writing more about this in future posts.

To validate even further how much I feel diet plays a big factor with this and many other conditions, I found this article about Ella, a nineteen year old who suffered with POTS as well and how she started to feel better after changing her diet, “The Recipe That Launched a Book Deal” by Christina Liva.

Having an invisible illness can be a struggle. People can’t see what is going on inside of your body. They also can’t see the loss of identity that occurs when you no longer can do the things you used to do. I was a Registered Nurse, that was part of who I was. The difficulty trying to remember simple words is hard enough, such as trying to write this or any blog post. I no longer remember many of the things I learned in over thirty years of nursing.

If I am out, the first thing I do is try to find either a couch or chair to recline in. I spend a lot of time on my couch or on the bed at home as well. My kids know where to find me!

Mom Blogger Buzz

Please help spread awareness:

I am hopeful that changing my diet and including some exercise will help me overcome many of the symptoms I deal with on a daily basis. As we try these awesome recipes I will share them with you and also any results I am having. So far I have lost another ten pounds and I am very happy about that!

photos by: &
Lisa Ladrido (66 Posts)

Lisa is an R.N. Mom Blogger and the author of Mom Blogger Buzz. She writes about Social Media, Technology, Product Reviews, Blogging Tips, Travel, Family and Health. She and her husband live in the Seattle area. They have 5 sons, 4 grandchildren and 3 furry four legged children!


43 comments for “Living With POTS: I Am Not a Zebra

  1. Robin Rue (@massholemommy)
    May 29, 2015 at 6:54 AM

    Wow, sorry it took so long to figure out what it was. Glad you at least know now and are finding ways to deal with it.

  2. May 29, 2015 at 10:26 AM

    It can be so frustrating when something is not right. I am dealing with that now.

  3. thelesleyshow
    May 29, 2015 at 11:17 AM

    That had to be very frustrating dealing with all that. I hope everything works out okay.

    • June 1, 2015 at 9:53 AM

      Because it was so frustrating I thought that it was time to share my experiences. Thank you so much.

  4. Pam
    May 29, 2015 at 12:33 PM

    My daughter has POTS. I remember how frustrating it was for her to get a diagnosis.

    • June 1, 2015 at 9:54 AM

      I seem to remember that your daughter is dealing with this too. I am sorry to hear because I know how hard it is to “lose” your old self. Thank you Pam.

  5. May 29, 2015 at 12:48 PM

    Wow, I’m glad you know what’s going on. I hadn’t heard of POTS until very recently. That must have been frustrating and stressful wondering!

    • June 1, 2015 at 9:55 AM

      After more than 30 years of nursing I had never heard of it before either. That was part of the reason to start talking about it. I hate to see others deal with the not knowing for so long.

  6. May 29, 2015 at 2:04 PM

    I can’t imagine going that long not knowing what’s wrong and with no medications working quite right. I’m glad there are finally some healthy things you can try out though!
    Liz Mays recently posted..Love Your Curls!My Profile

    • June 1, 2015 at 9:56 AM

      I am hopeful that the diet and some exercise when possible will help Liz. Thank you again.

  7. Pam
    May 29, 2015 at 4:31 PM

    You have really been through a lot and it sounds like that journey really is ongoing for you. Although you feel weak and stressed, you actually are a very strong person to keep on keeping on. I give you a lot of credit. Congrats on your weight loss. I will have to check out that movie on Netflix.

    • June 1, 2015 at 9:56 AM

      Thank you so much Pam. I hope you find the movie helpful to you and your family.

  8. May 29, 2015 at 4:41 PM

    I bet you feel some comfort knowing what you have though.
    Amber NElson recently posted..MAMA RECOMMENDS: Products You Should Have For SummerMy Profile

    • June 1, 2015 at 9:57 AM

      Yes, it is a relief to know what I have, even if it stinks! Thank you Amber!

  9. May 30, 2015 at 7:24 AM

    I have never heard of this before. I am sorry you had to go through so much for a diagnosis.

    • June 1, 2015 at 9:58 AM

      Yes, I had never heard of it before either. Just spreading awareness now that we do know. Thank you.

  10. May 30, 2015 at 11:06 AM

    Man, that’s frustrating. Almost every time I go to the doctor for a reason, the doctor really never has a diagnosis for my problem. I’m lucky that it’s never been anything serious (I don’t think) or long lasting. Glad you find the diagnosis for you.
    April G recently posted..CSSI Method ~ The Key to Reading Food Labels for Weight LossMy Profile

    • June 1, 2015 at 9:58 AM

      Thank you April, yes, doctors can be frustrating but again they are just human. I hope you are doing okay too!

  11. May 30, 2015 at 11:39 AM

    I am sorry about this. I am glad you got it figured out though and taking the right steps
    ourfamilyworld recently posted..10 Summer Maternity Outfits That Take You From Casual to ClassyMy Profile

    • June 1, 2015 at 10:02 AM

      Thank you, I am glad too. Hopeful that the diet works.

  12. May 30, 2015 at 12:26 PM

    Well – that is so hard to hear that you went through all of this – I am so sorry –
    And for us – my hubby got really sick for about 6 mths (I thought is was as simple as yeast allergies – as I suffer from that ) but 2 different doctors did not agree and he went through a lot – until he gave in and tried the diet I am always on, plus did his own research – and got better – it was a nightmare for him at the time – I am so glad you’re on your way to improvement now
    Donna Ward recently posted..What Results Do You Want From Your Blog and Social Media?My Profile

    • June 1, 2015 at 10:01 AM

      I think diet plays a large part in many conditions Donna. I am glad your husband is feeling better now. Thanks again.

  13. Jennifer Williams
    May 30, 2015 at 3:52 PM

    I am glad you were finally able to find a diagnosis, that is a relief. I have been waiting years for one for my issues and am in the hunt for a new doctor with fingers crossed again to find out. Hopefully you can start seeing changes and they will find a treatment to at least alleviate some symptoms.

    • June 1, 2015 at 10:01 AM

      I hope you find the answers you need too Jennifer. Take care and thank you.

  14. May 30, 2015 at 9:31 PM

    Being an occupational therapist for 3 years now, I have never heard that diagnosis before. Thank you for sharing this as I will be more aware is a patient comes in with this diagnosis. I’m just sad that it took so long for them to figure out what was wrong & treat appropriately.

    • June 1, 2015 at 10:00 AM

      I was an RN for over 30 years and never had heard of it before either Annie. I am glad to spread awareness and maybe you can help some of your patients that come in with this disorder. Thank you so much.

  15. May 31, 2015 at 10:58 PM

    I cant believe I am reading this! haha. I am 28 and was diagnosed with POTS a year ago (I have been really sick for almost 4 years now) I had to quit my job and I have not been able to leave my house in a year! I have to use a wheel chair to even get around. Some days I feel like I will never get my life back. It feels so good to read your post and know that I am not alone. Let me know if any diet changes work for you. I cut out gluten (and it helped) but I am not sure of what other changes I should or shouldnt make. Thank you again for sharing!! Made my day.

    -Clarissa

    • June 1, 2015 at 9:52 AM

      I am so sorry to hear Clarissa. The vegan diet seems to be helping. I use the Forks Over Knives app for recipes and so far they have been delicious. We still eat fish and at times meat on occasion but I do see the difference in my health when I eat meat. When I read the part about Ella who had POTS and got better, that gave me hope. Take care and I am glad that I could help in some small way.

  16. Valerie Hansen
    June 1, 2015 at 7:27 AM

    Sorry you have to deal with this illness, makes me thankful for the few aches and pains I have…I am 50 already…ha, but for the most part I am thankful for great health! I am glad you were able to get some answers. I hope the days ahead are more healthy for you! Thanks for sharing!

    Valerie

    • June 1, 2015 at 9:48 AM

      Thank you Valerie! I am hopeful too! I think I finally needed to start talking more about it!

  17. June 1, 2015 at 10:19 PM

    Lisa, this was such an encouraging read. Your honestly and bravery will help so many people.
    Tirralan – Tinseltown Mom recently posted..10 Celebrity Moms with Bipolar DisorderMy Profile

    • June 3, 2015 at 7:31 AM

      Thank you so much Tirralan! I hope I can help at least one person.

  18. June 4, 2015 at 3:28 AM

    yeah its awesome helpful for me nice to write about this topic thanks for it

  19. June 7, 2015 at 7:50 AM

    Oh honey, I had no idea you were dealing with all this. I don’t think talking about it shows signs of weakness at all; in fact I think it is quite brave to put it out there. But by doing so, you have opened up the door to awareness for others and more importantly, a support group for yourself. I guess when we hit 50 our bodies decide to do strange things to us…I’ve got my own weirdness going on right now…nothing as serious as what you have…but when our bodies decide to be strange, it becomes quite disturbing. Sending big hugs your way!
    Mitzi recently posted..When Tranquility Seems Out of ReachMy Profile

    • June 10, 2015 at 11:28 AM

      Thank you so much Mitzi, that means so much. I hope things are okay with you. Yes, 50 can be not so fabulous sometimes! I do hope to spread awareness. Thank you for the hugs too! xo
      Lisa Ladrido recently posted..Living With POTS: I Am Not a ZebraMy Profile

  20. Elizabeth O.
    July 6, 2015 at 2:21 AM

    It must be so frustrating to go on for months without an idea of what’s really going on. Good that you know now and doing things to overcome the symptoms.

  21. Elizabeth O.
    July 17, 2015 at 4:57 AM

    You have gone through a lot and I am sure it was very stressful for you. It’s good to hear that you finally know what’s going on and is doing something to make it better. Good luck with the diet. Take care!

  22. July 18, 2015 at 8:57 AM

    When you have a rare disease like that, people do tend to treat you differently, whether they know it or not! Thank you for bravely posting about your struggle!
    Sabrina @ Dinner, then Dessert recently posted..Hawaiian Luau Slow Cooker PorkMy Profile

  23. July 23, 2015 at 12:49 PM

    I had no idea such a disease existed, sorry for all the suffering and glad you atleast know what the diagnosis is.
    Miranda (Myrabev) recently posted..{Guest Post} The importance of bedroom accessoriesMy Profile

  24. Amy
    September 6, 2015 at 6:43 PM

    What was the name of doctor at us we live in Marysville and I believe my son has this and need help finding doctors.

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